Bisphosphonates

[Yealink]

I was diagnosed with PMR at the end of January, it did take 4 GP's to finally decide on the problems, my GP started me on 20mg Prednisone which has helped greatly, no more pain! I am now taking 10mg for a couple of weeks, then advised to alternate take 2 and 1. My question is, do I need to take a bisphosphonate, at the moment I am refusing as I am worried about the side effects, and the fact I may have to be on them for a number of years, I'm also quite nervous about taking them, my diet is varied and I do check the calcium content. I am taking calcium and Vit D which was prescribed?

[DorsetLady PMRGCAuk volunteer]

Welcome,

We usually suggest asking for a DEXA scan before taking a bisphosphonate to see if it’s actually required - might not be so easy in current climate. Unless you already know you have osteoporosis. For most people the ViD/calcium supplement is sufficient.

If you were only diagnosed last month, although 20mg is slightly high on the starting dose scale to be down to 10mg already is mighty quick...and the suggestion that in a couple of weeks you alternate 10mg/5mg (if that’s what you mean) I’d almost suicidal.

Although you don’t say, it would be useful to know what country you reside - your regime doesn't sound like the practice normally followed in UK.

You might like to have a read of this link (including the replies)- and it would help greatly f you put a bit more info on your profile please -

healthunlocked.com/pmrgcauk...

[Yealink in reply to DorsetLady]

Thank you very much for your reply. I am going for a DEXA scan in a couple of weeks, I don't have osteoporosis (at present and hopefully not in the future!)

I am based in the UK.

I was having terrible side effects on 20mg a day, and I'm sorry I didn't mention that for 2 weeks I took 15mg a day, now I'm taking 10mg a day and from next week she wants me to alternate 10mg/5mg.

At the moment 10mg is working and I'll be interested to see if the new plan next week works.

I will certainly update my profile and I'm sure you can tell I'm new to this!

[DorsetLady PMRGCAuk volunteer in reply to Yealink]

Okay thanks....but you might find 10/5mg very difficult. Is she doing that because of side effects at 20mg or some other reason?

More usual reduction is 15-12.5-10mg ...then reduce by 1mg every 4 or 8 weeks (depending on patient and disease activity).

As you can see you are much, much quicker than that.

[Yealink in reply to DorsetLady]

It was purely related to the side effects, not sleeping, stomach pains, and very emotional. Maybe I have pushed her into the quicker reduction, I couldn't cope with the effects and trying to do a full time job! I think I'm trying not to accept the diagnosis and just want to stop all of the tablets too soon. It's been quite difficult as I'm sure everyone here knows, to go from being an active 65 year old to feeling totally miserable and not being in a position to do even the boring mundane tasks on a daily basis. You have been very helpful and I thank you.

[DorsetLady PMRGCAuk volunteer in reply to Yealink]

We do understand the situation - but you do need to accept that you have a long term illness... and there is no point in not taking enough Pred. You get the worst of both worlds - some of the side effects from meds and no relief from symptoms. . As for work, you need to get line management and HR on side to help you. Just because they can’t see your illness doesn’t mean they don’t have to help. If they value you, they will assist.

Take care - and just ask please.

[Yealink in reply to DorsetLady]

Thank you so much, I do have a very good manager who is very supportive, having worked for the company for over 30 years he should understand me by now!!

[DorsetLady PMRGCAuk volunteer in reply to Yealink]

Well in that case maybe you should let him read my link (or relevant parts) - he will then understand your illness as well as you! 😊

[Yealink in reply to DorsetLady]

Thank you. It’s early days for me with PMR and I’m sure given a little more time I will accept my illness.

[Yealink in reply to DorsetLady]

Thank you for welcoming me. I was diagnosed on the 11th January 2021, not the end of January as mentioned - sorry for the confusion.

[piglette]

I may have misunderstood but going down to 5mg after not even a month sounds like a trifle fast to me. I am glad you are getting a Dexascan. My bone density is always very good, but I am always having fights with my GP about taking bisphosphonates. I think he must get a cutback from the supplier!!

[Yealink in reply to piglette]

Having read the posts on this great site, I'm maybe inclined to agree with you! My GP wanted me to start them straight away and 4 weeks in she is still trying, she wants to see where my bones are now and then will discuss further, but I'm still not taking them! As for the cutback well.....

[piglette in reply to Yealink]

If I had bad osteoporosis according to my Dexascan I might consider them. I think there was something written somewhere that doctors should give bisphosphonates to people with PMR, so common sense gets forgotten.

[Yealink in reply to piglette]

Thank you, I agree, I too would consider taking them.

[herdysheep]

When you have your dexa scan ask for the actual figures for comparison later down the line. They have a habit of just saying 'normal' or similar which does not give you anything to refer back to if ou have a further scan.

[Yealink in reply to herdysheep]

Thank you, I will ask for the actual results.

[PMRpro Ambassador]

Hi and welcome.I do realise the adverse effects at 20mg may be a bit difficult, and you have been really lucky to get to 10mg so quickly. I really don't recomend her idea of alternating 10 and 5mg - it is a big difference in dose and if she wants you to go that fast then going to 7.5mg every day is far better.

However, you are not reducing relentlessly to zero and then stopping the pred soon - PMR lasts years, not weeks. From 10mg it is far better to be patient and reduce 1mg at a time at the most. That reduces the risks of overshooting the dose you want - the lowest dose that manages the symptoms as well as the starting dose did. If you do overshoot you will very soon be back in the same state that sent you to the doctor in the first place and it may be harder to get things under control again. One in five patients is able to stop pred in a year but are more likely to have a relapse later, by 2 years 1 in 3 are off pred. For the rest of us it is longer - you may have to learn to live with the joys of pred for some time to come. It does usually improve with time as your body gets used to it and most of us have a reasonable quality of life - especially compared to PMR without pred. I had 5 years with no pred because I wasn't diagnosed and nothing would persuade me to go back to that! But most adverse effects can be managed/mitigated or avoided altogether when you know how. Just ask.

[AdoptMeow]

Alternating between 10 and 5 mg doses is a treatment protocol for rheumatoid arthritis. Some doctors think that rheumatica indicates that the disease is arthritis. But PMR is actually vasculitis.I did read last year that a clinical trial was done with PMR patients placed on the alternating schedule. The conclusion was that is was not a successful approach.

Many doctors also do not realize how quickly the body can return to swelling and pain when the prednisone dose wears off. I learned pretty quickly that for me a once daily dose was not effective to allow me to sleep through the night. So I started taking 1/4-1/3 of it after dinner.

As PMRPro wrote, it makes more sense to just take the average 7.5 mg than to experience increased stiffness and pain every other day.